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Ataxia Support Network

How fast does Ataxia Progress?

#1

Hi Everyone…………I have progressive hereditary cerebellum ataxia and trust me I am so afraid of seeing how fast this has progressed. I can’t sleep well at all and my mind is thinking all the time. But yet I never read that others have progressed. I have always been an upbeat good natured person with positive thoughts. Lately I am down an for sure things have progressed. To fast for me. I am still walking but very slow with caution. My speech has slurred and I sleep a lot. I have an additude that I am useless as I am unable to do much with such terrible balance. Since Christmas I have had it in my mind that things are happening to fast for me to the point that I won’t be around for another Christmas. Now please do not take this as a feel sorry for me type of letter. Please don’t. I am feeling this way and I wonder if others have these feelings also? I can’t understand why I have so much bothering me. I’m lonely on the inside and sad a lot feeling alone. I need to ask others is this a sign of depression? I need to know as I have never had the problem before to know for sure. Please help me to know what my problem may be, I so appreciate your true opinion. Thanks all.

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#2

Vickie, I’m so sorry to hear of your plight. From what I gather, it’s not a long time since you developed Ataxia. No one wants this but take my word for it, there will come a time when you will “accept” the condition and learn to cope with it. We’ve all went through the same feelings that you are experiencing; you are not alone. I’ve had this illness for over 50 years and truthfully, I doubt that I will ever accept it fully. Unfortunately, it IS what it IS. I was given excellent advice many years ago and I’d like to share it with you. Hope it helps.

“You have two choices when dealing with this illness, either you can let it overwhelm you or you can continually try to overwhelm it.” I chose the latter. Best of luck!

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#3

I was diagnosed back in 1996, and my progression has been slow and constant since then. It’s different for everyone, and the point of ‘acceptance’ is different for everyone too.
The depression is pretty standard. I still struggle with it. It sounds like you may be too.
My best advice is to talk to your doctor, maybe try an anti-depressant. And I know not everyone can do this, but you won’t worry and think about it too much if you choose to focus on the things and people in your life that make life worthwhile. hat’s what keeps me going and not worrying about the next shoe dropping.
My heart goes out to you. This disorder, in a word, sucks.

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#4

Hi Vicki😊 It’s not unusual for replies to posts to be ‘upbeat’ we are a support group and the obvious thing is to try and raise spirits whenever possible. But, it also helps to offer a certain amount of empathy, this lets the other person know you’ve experienced something similar, and can truely understand.
This Christmas I had something of a meltdown too. For a few weeks I’d been feeling pretty similar to yourself, then I had terrible news from a friend, a close relative died, and a dearly loved pet died.
It’s all to easy to get totally self obsessed with our ataxia, we live with it 24/7, and it can be incredibly difficult to explain symptoms that challenge us to extremes, yet remain invisible to others.
My particular symptoms seem to fluctuate to a degree… Some things like speech problems, swallowing issues and fatigue come and go in intensity, but balance has most definitely worsened. I no longer feel safe outdoors without a walking stick, or rollator. Indoors familarity is a comfort, I’m totally aware of boundaries, and tend to wallwalk only when I’m tired.
It won’t harm to talk your feelings over with your GP, a mild antidepressant could be very helpful, it could help you relax and get into a better sleep routine. In the past, I’ve been prescribed an antidepressant, and have to admit it has crossed my mind to ask for it again. There are degrees of depression, like ataxia it’s poorly understood, especially from people who have never experienced it, or would staunchly deny it anyway.
:kissing_heart: xB

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#5

I wanted to second Beryl’s idea of speaking to someone about a mild antidepressant – and add the thought of speaking to a therapist who deals with people who have chronic physical issues and chronic pain.

Don’t get caught up in the stigma of depression/mental illness. Although the general view of mental health has improved over the years there still can be a feeling of unworthiness when you think you might be depressed.

I would be MORE concerned if you were NOT dealing with depression every so often! You have a massive amount on your plate, much of which is not understood and does not have concrete help available. It’s tough to be adrift with ataxia (or any chronic issues for that matter).

I think you should speak to someone about mild depression and how to deal with it, as well as dealing with the reality of your every day.

azurelle

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#6

Vickie,

You described the feelings associated with depression very well, (which I know as a retired mental health professional) and I have no doubt you are suffering from that. I second all the other opinions you got about talking to your doctor. Depression is treatable, and it is not necessary to continue on feeling so bad. Depression seems to be one of the physiological consequences of ataxia and many people here, certainly including me, are being treated for it. Like you, I never had depression symptoms before ataxia. I know that my thoughts are much more positive and my sleep is better after being treated. My husband also reports I am nicer, too, whatever that means. One thing I am concerned about is that you said your mind is always going and that is more a symptom of bipolar disorder than depression. You should probably be evaluated for that, too, since the treatments are different. Good luck to you!

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#7

Hello, how are you? This Cerebellar is progressive for us all. Sorry to say it but it’s true. If your Ataxia is progressing faster in you then get genetic testing done so you know your mutation rate of the illness because of that maybe high like mine. What you should ask your Neurologist is if it’s high how can you get it to lower? Also, check out the latest publication about diet, allergies if any to Gluten, and B12 for cerebellar people. This is all on the National Ataxia Foundation web site. I look at walking like this I can still do it and when I stop I will crawl! I still can talk I am sure they still understand you. I’ve done this illness only for 6 years and it’s been high all this time. You will never overwhelm it because of the mutation inside you if it’s high learns you and get better when you have episodes of anything (speech, walking, spasms, food, eyesight, you name it). Trust me, I can tell you more, but to me, it’s all about what you are willing to learn yourself by the information you get!

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#8

I am sorry for ur illness I agree with Chas 571 you must accept it. I have had this for 30 years I have poor balance and use a walking stick in the snow and on uneven surfaces
A doctor said to me 30 years ago accept it. Many people have other diseases they cannot get up in the morning he said u can complain a little. But then after a while ur freinds do not want to hear it. You will loose your freinds. Husband everyone so just accept it. Do the best you can good luck to you no one has the control of what happens. Try to smile and accept what life gives you

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#9

Hi,
I’m not sure if you were referring to my post regarding the overwhelming idea. It’s not that you’re going to beat it, it’s the mental thought process that I was referring to. Keeping a positive outlook as best you can is the only way to think in my book. It’s like the old thought “Keep your chin up.”

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#10

I fear that some responses do not recognize depression for the serious disease that it is. Having a.positive attitude is great, but telling someone that does not help depression. We all want that positive approach, and try hard to have that, but we all have some negative thoughts because we are human. Depression goes beyond that and needs treatment.

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#11

Vickie,
After being diagnosed with Ataxia, it was recommended that I might want to see a Psychologist. Being a baby boomer & raised in rural Nebraska, we weren’t aware of mental issues. I was diagnosed with GAD (General Anxiety Disorder) & given a non-additive medicine called Lexipro. After finally determining the correct dosage, it really helped with the “what if’s” & I have been able to sleep a lot better. I really believe that this disease, as well as other chronic diseases, has a mental health component with it and seeing a psychologist has really helped. It hasn’t slowed the progression, but has helped me how to better deal with the inevitable. Hope this helps you to know that you’re not alone. Blessings & best wishes.

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#12

Hi Vicki,

Progression, is a million dollar question, even your neurologist cannot answer, as each individual is different and different lives…And yes, basing on what you are writing, you should address your troubles regarding dark thoughts…As I am not medically trained and can ONLY speak as a lay person, there is very important to distinguish between your sadness (could lift once longer days, lack of sunshine…I definitely suffer from it SAd, SEASONAL DEFICIT…IT IS GRADUALLY GETTING BETTER…IF IT PERSISTS sadness, weepiness…dark thoughts, see a doc, go as far as meds if that helps…My bro is similar to you, lesions on the brain-cerebellum, balance probs. One thing I noticed winter times is hard, I am personally in bed at 21.00( long time), cold brings out stiffness of the joints…My ataxia, worse than my bro, I cannot walk, use a walker-rollator, no gait…try to do your best with what’s left and sort out your mind. hard enough physically, never mind mentally…NO SHAME in it…my bro similar, struggling with existentional problem, always a breadwinner, now different. Good luck!

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#13

As you can see you are surrounded by friends who know the condition well. It took me a very long time to accept it was happening to me and deal with in a positive manner. you CAN ,you WILL you ARE going to deal with this positively. It is a shock when first diagnosed and for a while afterwards we are all different and deal with it in our own way. I sense you are strong and you are amongst understanding friends. I have learnt through experience that doing as much exercise as you are able (core strength is vital) and eat to sensibly. We will get through this together. Peter Ashbourne England.

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#14

Hi Vickie,

The rate of progression is different in all cases. I’m lucky, in that it would appear to be progressing quite slowly for me.

Acceptance is the key. And, again, how long it takes for this to happen is completely different for everyone. And you can’t make yourself accept your ataxia. You can’t kid yourself on. But, as others have said already, “it is what it is”. It’s your new reality. But I like to look on it as the start of a different life (which is what you make of it), rather than the continuation of a failed “normal” life.

And depression is normal, well it was for me. But it passes - with acceptance - so I would definitely avoid medication for depression. It’s more like the feeling of a bereavement - except you are mourning your own life (as it was). But over time, and with true acceptance, this continually lessens.

The depression side is what affected me most. Like you, I’d like to think that I was a happy, positive person before. So had further to fall. But, once I accepted that I wouldn’t be doing certain things again, the happy-go-lucky me returned. True, the feelings of sadness never go away, but they do diminish (and without medication). I use a wheelchair now, and rather than feeling that this is some sort of personal failure, the opposite is the case. Just like that, balance is no longer an issue for me.

And as for feeling useless. You will continue to feel useless if you continue to try to do the things you could do well before. But there is a marvellous feeling of achievement, and of boosting your feelings of self-worth, in accomplishing new, but different, things. You might not be able to do what is considered “normal” - but there WILL be things that you can do. Things that will make you happy.

So accept, and enjoy, your new life.

Iain :sunglasses:

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#15

Vickie I’ve had ataxia for 18 years and it has changed over the years. Some symptoms have progressed more than others but overall I’m pretty lucky. The fear of not knowing what to expect was the source of early on depression for me. My children and grandchildren moved in with me as I was feeling my symptoms move quickly worse. Having them around kept me from becoming too frightened although I was mildly depressed. Talking with a psychologist might be more valuable than meds. I’m not so afraid anymore and have built a good life for myself. Kids have moved on. Taking care of all my health issues has been key to keeping rapid progression at bay, i.e., sleep apnea, blood pressure, diet, and exercise. Some symptoms rarely appear any more. I read about an MD with Ataxia who used a walker until he discovered that exercise would help him with balance. It helps me too. He can now go without the walker and seems in great shape. Take it a day at a time and do get help with depression from a therapist, not just meds from a GP. The combination of both works best. Good luck to you.

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#16

All comments are good advice when it comes to dealing with your condition, they depict a general rate of progression depending on the type of ataxia (for example SCA[#]).
I think the take home message is; no matter what type you are diagnosed with, it presents different for everyone. the rate of progression can be quite different from one individual to another even if they share the same disease. The important aspect to realize is the possible symptoms or rate of progression for each. Symptoms can vary, however, a common thread shared by all seems to be depression, or some type of negative mental disorder associated with this illness.
Unfortunately, it is quite common to become depressed when you realize the prognosis of your condition. Healthy individuals cannot begin to understand the anguish.
I know first hand the consequences of severe depression, being hospitalized twice.
On my last dr. visit they conducted a verbal survey with me that revealed depression. I remember exclaiming: “of course I’m depressed, put yourself in my shoes”! (an impossible feat in my opinion, I wouldn’t wish for anyone to go through this crap!)
The best is friends or family that help, the trick is knowing enough to ask for help. (a visit to this site is always good)
Simple things like having someone bringing me a coffee or lunch seems to help raise spirits. A simple visit helps too.
I realize that for some, friends or family are non existent, this is unfortunate. I think in this case finding anything or anyone that brings joy and/or happiness is important. There always seems to be friendly strangers willing to listen.
For me I have a few genuinely compassionate friends and family, but the true comfort comes from a visit to this site. Even though I’ve never personally met anyone here, visiting provides me with some sort of therapeutic treatment that I can’t get anywhere else.
The last matter of importance in my opinion is proper diet and exercise. These two are always good even for healthy individuals. The mental benefits are astounding. Research has reviled that good diet and exercise can have a profound positive effect on the brain and mental health.

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#17

Hi Vickie, Lots of good comments here and would like to add my sentiments. I am 76 years old and live in UK. I started having falls and received presumed diagnosis in my late 50’s. The progression has been so slow that I have not noticed it… it is only only on reflection that I realise the things I can no longer do. Not like having an accident is it? I did at one stage attend counselling for long term illness and this did help me recognise my fears. I use hypnotherapy recordings when I cannot sleep … but also when I just need rest after lunch. The brain still working but body unable to perform! I wonder, do you live alone? My husband has health issues too so I have to make compromises. However it does have compensations such as knowing someone cares about me. We moved to be near son, wife and 3 children about 6 years ago but they have their own life and we often go weeks without seeing them. Thank heavens for the internet which keeps me in touch with friends and family on a daily basis. Fondest wishes to you. x

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#18

Hi Vickie,
I’m depressed too (not diagnosed, I just feel it)! Just diagnosed with episodic ataxia 2 months ago. I was relieved to get diagnosed but pretty pissed off about the reality of the diagnosis. There are so many logistical things I have to change in my life now. It’s hard to find the energy to figure it all out and make the changes (like moving).
When my negative thinking wont’ hush up, there are several options that help me. One, I play a video game (there’s actually good research on that). Two, I do lie down yoga while listening to some Bob Marley or classical music. Three, I watch a comedy/comedian. Four, I write a poem or in my journal. Five, I call a friend and ask how THEY are doing. Six, I pet my dog…a lot. And of course, I go online.
You are not alone.

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#19

It can be hard to find a balance of how far to push yourself and how much to let yourself rest.

Good old sleep helps more than anything. Don’t ever think that’s a bad thing. Get as much as you can. Sleep is the only time your struggling brain cells can repair themselves.

Diet, avoiding stress, and then moderate exercise helps too. I agree heavily to whoever suggested helping others. That can be as simple as giving advice to some goofus young person. It makes them and you feel good. Just don’t get so deep into helping that it gets stressful.

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